eSCAping Type 1

Disabilities are not laziness. Disabilities are not laziness. I’ll say it one more time for the people in the back. Disabilities are not laziness.

It’s unfortunately really common to “confuse” or even associate the two. Especially if it’s an invisible illness you’re dealing with.

I get it. Growing up I used to get so annoyed when my dad (who had SCA1) would ask me to do things for him that I had seen him do himself before. My husband gets frustrated helping me with tasks he knows I can complete. One time my physical therapist even told me one of her patients clearly wasn’t working hard enough because he “probably liked his wife doing everything for him.”

It’s tough to remember that we don’t all function the same way. That similar experiences have differing impacts. Something that’s really easy for you might be really difficult for me.

Throw in the fact that Ataxia is far from consistent – hence it being progressive. So, your guess really is as good as mine on what I’ll be able to accomplish tomorrow. There are days when a single task drains all of my energy.

But that makes me a spoonie, not “lazy.”

For example: We have a candle sitting on our kitchen island. But we just got a new shelf in our bathroom and it would look really cute in there. So, the other day, I got the candle (meaning I had to first position myself correctly and then slide it across the surface because it was at too awkward of an angle to pick up), found the lid (but couldn’t get it on after a billion attempts because my fine motor skills are shit), balanced both objects on my lap and carefully (aka very slowly) rolled to the bathroom, where I set the candle in the sink basin (to avoid accidentally knocking it over and breaking it), stood up (after 8 failed attempts, which drained every ounce of my energy), mustered all my remaining strength to hoist that candle up onto the shelf (while also somehow not falling, while also only using one hand since I had to hold onto the counter for balance). And then I had to sit and close my eyes because all of that was a huge amount of multitasking that my brain and body simply can’t handle anymore.

Then, when my husband got home from work and went to the bathroom, he brought that candle right back out to its spot in the kitchen without a second thought. He was helping me put it where it’s supposed to go. 

So, when later he asked me, “What’d you do today?” the poor guy almost got that candle thrown right in his face.

To any normal human being, it looks like I did nothing. I did not accomplish a single task all day. Moving a candle does not count as an activity. If you had done that, it certainly wouldn’t come up as something you did that day.

Plus, people push through being “tired” all the time. I definitely seem lazy compared to someone who got up early and went to work all day and then came home and cleaned and cooked dinner and walked the dog and…

I get it. My body used to be able to do that, too.

How ridiculous. You’re home all day with no job and no responsibilities and nothing is done? What do you do all day? Must be nice, being able to nap when you want. And having someone else clean, and take care of your kid, and bring you food while you just sit on the couch all day. How lazy.

I think a huge part of someone not wanting to ask for help comes with not wanting to seem lazy. We’re instilled with a  core belief that being lazy is bad, so we avoid anything that gives off that characteristic.

But, again, disabilities are not laziness.

Horrible transition, but same topic I swear…

One of those random, insignificant memories that will never leave my brain is a moment when my students were talking about “that thing lazy people can use to put on socks…” “You know, that device you just stick your foot in and it does all the work for you…” “Rich people can’t even bend over, now? Must be nice to be able to be so lazy…”

Not sure what I’m talking about? Watch the commercial by clicking the picture below:

It kind of falls into the same category as pre-peeled oranges and shower chairs and toothpaste tablets and magnetic fasteners and all those other highly-mocked, “lazy” products. You know, those late-night infomercials featuring overly-dramatic individuals who somehow struggle with basic tasks?

Now, I might blow your mind, but guess who those products are actually designed for?

I do blame the marketing companies almost entirely. The true purpose of these accessibility aids apparently isn’t visually appealing enough for their target audience. It wasn’t my students’ fault that people with disabilities aren’t in any of those commercials. It’s not wrong to see a banana slicer and automatically think, “Wow, people out there really can’t spend the two minutes it takes to cut a banana into chunks? God forbid those slices be different widths… How lazy.”

#RepresentationMatters

So, when I told those students how a Sock Aid would actually be really beneficial for someone like me, who struggles with fine motor skills and lifting their foot up, it was pretty obvious how that had never even crossed their mind. How the simple act of using a product, or requesting help, or not completing a task doesn’t automatically make someone “rich” or “old” or “lazy.”

There’s always more than meets the eye.

Laziness is, when it comes down to it, a choice. And I promise you, disabilities – regardless of what they are – are not. So, despite what it looks like, please remember…

Disabilities are not laziness.